Living with Aspies

Actual, unretouched conversation with my not-quite-13-year-old:

Me: So, how was school today?

G: Good.



Me: What did you do?



G: Not much.



Me (determined to get some information out of him): What are you doing in French?



G: Nothing much.



Me (now getting really stubborn): Well, what are you doing in science?



G: We're studying genetics.



Me (an opening): Cool! Actually, you and your brother are sort of interesting genetically -- your dad and I both have brown hair and brown eyes, while you and Q both have blond hair and blue eyes.

G: Obviously, you both had recessive genes that came together when you mated.




(It's the "obviously" that, for me, elevates this to art...)

DO THIS TODAY

The wonderful Mir of Woulda Coulda Shoulda has declared today a holiday: International Special Needs Kids Amnesty Day. If you ask me, it's way overdue. Won't you join me in spreading the word on your own blogs?

The holiday comes with six easy rules to follow, such as assuming every child you see is a good human and resisting the urge to judge said child's parents based on the child's behavior. For every child with a visible, obvious disability there is at least one (probably more) child with a disability that is not visible to the naked eye.

So let's all spend a day spreading a little judgment-free goodwill, shall we?

Autism Speaks, and So Do I

The lovely and gracious Mir of Woulda Coulda Shoulda interviewed me for her BlogHer column, as part of a series of posts in honor or Autism Awareness Month. The interview was just published and I think it's pretty good -- make with the clicky!

Friday Flashback: Birthday Edition

Two years ago, I was anxiety-ridden about Quin's transition to middle school. Our district has three small, neighborhood elementary schools feeding into one large, impersonal middle school, so it was bound to be a jarring transition, full of not only new routines, teachers and buildings to learn, but lots of new kids as well. New kids who hadn't gone through the easy-going elementary years with Quin. New kids who were not attuned to and unworried by Quin's... quirks. New kids who might be inclined to tease, or bully.

How I worried.

I had to fight the urge to phone every parent of a sixth-grader in the new school directory to tell them, listen, my kid's different and he can't help it. He may not look disabled or be obviously impaired, but he is, and he does peculiar things sometimes and is completely unaware of his surroundings sometimes. He does have one friend in his grade, yes, one friend, but is really going to need more friends and buffers and protectors in this new, enormous, anonymous place. I would be so grateful if your kid would be a friend to my kid and not tease him and maybe help him out a little. Please?

*****

I didn't do that, of course, but I did what I could for a kid who hates changes to routine and who sucks at transitions. We received his daily schedule ahead of time so we could go to the empty school building and walk the transitions between periods. We bought a Masterlock so he could practice how to get in and out of his locker. We bought school supplies and organized folders and went to group orientations.

And school started.

And after a few little bumps, it seemed as though Quin was starting to adjust well to the new routines. He started remembering assignments and books, and stopped arriving late to classes.

And I started hearing about a few new friends -- most notably B. in his gym class, who laughed at all of Quin's jokes and did silly things and was just fun to be with.

After a few weeks of tales of B., Quin mentioned that he sometimes uses a wheelchair -- but sometimes he uses a walker. At first, I was a little piqued that the school, in its infinite wisdom, had ghettoized all of the special needs kids in the same gym class (there was a girl with Downs Syndrome we were hearing stories about, too), but I let it go with some gratitude that at least Quin had found a friend.

*****

I was really looking forward to finally meeting B. and his mom when Quin's twelfth birthday rolled around last spring. We planned a romp at a local "family fun center" which would consist mostly of video games and rock-wall climbing, with pizza and cake to wind things up. When RSVPing, B.'s mom assured me that he wouldn't miss Quin's party for the world, though Quin wasn't sure how well B. would navigate the video games and whatnot.

Though I have never tried to confirm this, my guess upon meeting B. was that he has cerebral palsy. His speech and locomotion are pretty severely impaired, but his impish humor is easy to read and the affection between him and Quin was plain to see. While Quin showed B. to the party room to stow his coat, I spent a few minutes chatting with B.'s mom.

And what she said just about bowled me over. She, too, had been worried sick about her son's transition to middle school, and had been most anxious that he wouldn't make friends. And she was so obviously relieved and grateful that Quin had become B.'s friend that it hit me: while I'd been hoping that Quin would find a friend/protector who would help him navigate the scary new waters of middle school, he confounded my expectations by becoming a friend/protector himself.

In all of Quin's dinner time stories of the silly games that he and B. played together, he never mentioned that he helps B. with his walker when it gets stuck. Or that he goes up to the lunch counter with him when B. gets a snack, because B. doesn't like doing it by himself. Or that when the lunch ladies told B. that his account balance was low, Quin wrote a note to B.'s mom and sent it home with him, just in case B. forgot to tell his mom about the low balance.

And why would he? These are not noteworthy things, after all. Not nearly as interesting as the new game they've created involving B.'s stealing Quin's glasses and pretending to wear them. These are just things you do, unasked, when your friend needs a hand.

But hearing about them made me tear up, nonetheless.

Quin turns 13 today, and I am much less anxious for his future than I was five years ago when he was diagnosed with Asperger's syndrome. As I imagine his future, I think he is not only going to be rich in friends who share his sense of humor and obsession with Bionicles, he is also going to be a thoughtful and kind friend to others. And for that, I am so very grateful.

Happy birthday, baby. I love you so much.

Paris, Day One

Once we finally got access to it, our apartment was quite charming:



Two bedrooms, kitchenette, living room, and balcony overlooking the courtyard. Unfortunately, I forgot to take pictures of it until the end of the trip, and my memory cards were all full. But at least you can see the exposed beams of the living room ceiling...

Our little neighborhood was terrific, also. We stayed just around the corner from Place de la Sorbonne:



We spent a fair bit of time in one or the other of those little restaurants.

*****

We had planned to visit the Louvre on our first evening in town, and after naps, that's just what we did.



For reasons unfathomable Garrick was very keen to see the Mona Lisa, but it was the Greek and Roman statuary that really engaged the kids. Partly due to their knowledge of mythology, partly due to partial nudity, I'm sure.



After trying and failing to get a decent photo of La Joconde, we meandered through the galleries, letting the kids' interests guide us. We spent a fair bit of time in front of this monstrous canvas.



The museum was un-crowded enough that we didn't have to hover over the kids, which was nice. Travelling with two Asberger boys can be challenging, in that they have a hard time adjusting to unfamiliar surroundings and to using appropriate behavior for said surroundings. Add jet lag and a foreign language (and at three other control-tendencied adults) into the mix, and I ended up doing a lot of situational managing. It's a very fine balance between making sure the kids are a) safe, b) behaving appropriately, and c) not being micro-managed. I'm not sure I was able to achieve that balance as much as I would have liked, but after a few hiccups, we didn't do too badly.

My kid brother and his girlfriend (who live in Singapore) had been traveling in the south of France, and were driving up to Paris that first evening. Thanks to international cell phones, we were able to all find one another in time for a late supper:



It's a crummy picture, but a true reflection of how strung out and faded we were all feeling. Poor Garrick actually fell asleep while waiting for his dinner:



Next up: Le Jardin des Plantes and La Tour Eiffel.

Garrick Learned a New Word Last Night

In an effort to curb the compulsive channel-surfing that I am wont to do, Michael and popped "Charlie Wilson's War" into the DVD player after the kids were tucked in last night.

(It is here worth mentioning that the kids almost never re-emerge from their rooms after tuck-in, so we were reasonable in our assumption that we were "safe.")

We were only about 15 minutes into the movie -- the middle of Philip Seymour Hoffman's argument with his boss -- when Garrick poked his head into our bedroom. The dialogue at the time was running thusly:

"Fuck you!"
"Fuck me? Whaddaya mean fuck me? Fuck YOU!"
"Who is this fucking guy? I don't even know what he's fucking doing here!"

and so forth.

It was beyond the laws of physics to grab the mute button in time.

Luckily, Garrick was so intent on asking me what happened to the bathroom nightlight (the bulb burnt out a few nights ago and I haven't replaced it yet) that I don't think he even noticed that strange word eminating from the Oscar-winning actor's mouth.

Asperger's has it's small compensations.

Ripping Off the Band-Aid

Asperger syndrome is a condition marked by impaired social interactions and limited repetitive patterns of behavior. Motor milestones may be delayed and clumsiness is often observed. Asperger syndrome is very similar to or may be the same as high functioning autism (HFA).

*****

At dinner time last Wednesday, Garrick asked "Did you know that Thomas Edison had a learning disability?" This was news to me. "Really? What kind of learning disability did he have?" "Uhh.... I think there's just one kind."

*****

When Quinlan was diagnosed with Asperger Syndrome, at the end of his second grade year, it shook me. He'd been identified as having some sensory issues back in kindergarten and had been receiving occupational, speech and physical therapy through our incredible school system, but somehow it had never occurred to me that there was something "real" and intrinsic wrong with or different about him. I remember getting the call from the school psychologist at work almost four years ago now, and weeping into the phone while she detailed his test results.

*****

"Actually, buddy, there are lots of different kinds of learning disabilities. Have you heard of dyslexia?" At this point, I was vamping a little -- stalling for time to decide quickly how far I wanted to take this conversation with the kids. Michael was out for the evening and I was quite on my own. "People with dyslexia have a hard time reading because their brains don't process the words on the page the same way most people do."

*****

We had never heard of Asperger Syndrome before Quin's diagnosis, but with the internet as our friend, we learned quickly. The shock of recognition hit time and time again as we scoured articles, grasping at the proverbial straws. Repetitive patterns of behavior, check. Restricted interests, check. Motor clumsiness, check. Atypical use of language, check. And on and on.

*****

"Can you think of any other learning disabilities?" "Down Syndrome!" Quin piped up. "Well, sort of. Down Syndrome is more of a developmental disability -- though it certainly affects a person's ability to learn, it affects a whole lot of other things, as well." "What did Thomas Edison invent, again?" This from Garrick, who is still thinking about facts and history and science and wanting to get it all right. "The light bulb, Peanut. He invented the light bulb."

*****

News of Quin's diagnosis was received by our extended family members with some controversy. Michael's mother's immediate reaction was "Oh yes, I thought that might be the case." (But it never occurred to you to suggest it to us?!!?) My mother's reaction was the opposite -- complete denial. It took months and months for her to accept that Quin wasn't just a bit unique, that he had a clinically diagnosed developmental disability.

*****

"What about autism, guys? You know about autism, right?" One of Quin's best friends has a younger sibling who's autistic, and I know that the elementary school has discussed autism with the student body as a group. "Oh yeah, autism!" This from Quin, who was following the discussion quite a bit more actively than I would have expected him to. I paused, not sure how much further down the path to go.

*****

When Garrick was diagnosed with Asperger's at the end of his first grade year, it was almost old hat to us. We'd had a year to get our bearings with regard to the extra services the school would provide Quinlan, and the sting of potential stigma at the new label had mostly faded. Quin was still Quin, after all, with all of his quirks and talents and undiscriminating heart unchanged. He was making good progress with occupational and speech therapy, and I was learning to game the system to ensure that school provided everything they could to ensure his academic success. My immediate reaction to Garrick's diagnosis was, "Great -- now I have the leverage I need to make sure he gets a teacher next year who's not going to be so rigid that he's out in the hallway crying three times week." First grade was a tough year for my baby.

*****

A very deep breath, now. "There's actually another learning disability that's similar to autism, but not as severe. It's called Asperger Syndrome." "Alexander Graham Bell invented the telephone." "Absolutely right, G-man. Um, Asperger Syndrome is kind of interesting. Some of the characteristics of Asperger Syndrome are things like hand-flapping, Quin." Silence. What have I gotten into? Help! "Gar, another characteristic of Asperger Syndrome is being able to learn and retain lots of factual information about things." "Quin, do YOU have Asperger Syndrome?" This delivered to his brother with the same sly, teasing smile on his face that he uses when he makes an outrageously false and insulting comment, like "My brother has no brain!"

*****

Because Garrick's symptoms present in very different ways from Quin's, there once again was some controversy in getting some members of the family to accept his diagnosis. This time, I didn't really care. I saw no need to haul Garrick down to Children's Hospital for more formal testing, as I had Quin -- what difference would it make? Bring on the speech therapists for social pragmatics and give us a warm and accepting second grade teacher, and we'll manage, thanks.

*****

Jumping off the cliff, now. "Actually, Garrick, people who are experts in this kind of thing have told me and Daddy that both you and Quin have a lot of characteristics of Asperger Syndrome. Like Quin's hand-flapping and your ability to absorb and remember all those facts about the solar system." "And about dinosaurs?" Quin is always my helpful boy. "Right, Quin, and about dinosaurs. A lot of people with Asperger's are only interested in one or two topics, like model trains or dinosaurs, and learn as much as they can about just that topic." I can't remember another time that they were both so rapt with attention. "Quin, you know how you have such a fabulous memory and such an intense sense of smell? That's to do with Asperger's. And Garrick, all of the information you've learned about so many things -- dinosaurs, the solar system, the human body -- that's to do with Asperger's, too."

*****

Quin's magical year was fourth grade. Things just suddenly got easier for him. Instead of being socially isolated, he made one terrific friend (to this day, his best friend) and that experience just opened his whole world. He'd always been comfortable interacting with adults and with children younger than himself, but had no idea how to connect with his peers. In fourth grade, that started to change.

*****

"You guys know how you have speech therapy in school, and sometimes you've had occupational therapy? And Quin, you remember having physical therapy? Those were things we arranged for you both to help you learn stuff that is harder with Asperger's. Basically, people with Asperger's brains just work a little differently than most people's, and some things that most people learn just by instinct are harder for people with Asperger's to learn. So that's why we arranged those things for you, to make it a little easier." I kept checking their faces for any signs of confusion or distress, and there were none. Just rapt attention and an eagerness to understand.

*****

There is some controversy in Asperger's circles as to whether to tell a child that he or she has the syndrome. One school of thought is that the kid will self-identify as different or somehow wrong, causing poor self-esteem and exacerbating any existing emotional problems. Another school of thought is that knowing the diagnosis is empowering to kids, allowing them to understand why they feel different from their peers, and giving them tools for coping with those differences. Obviously, it's going to be different for everyone. But I kept remembering what my friend Val had told me, years ago. Her daughter is some years older than Quin, and she has Asperger's. I had sought Val out for advice and support in my weeks of flailing after Quin's diagnosis. "You'll know when it's time to tell him," she told me. She was right.

*****

Dinner ended, as dinners do, and the kids scattered to read books and pet the dog and line trading cards up along the floor of the playroom, as kids do. Alone, I cleaned the kitchen and made the lunches and walked the dog and the whole time felt as though the earth were spinning in a slightly different sphere, at a slightly different angle. Had anything really changed? Of course not. Was it different? Absolutely. Later, as I tucked each of my monkeys into bed, I made sure to invite more response -- "As you think about this in the days and weeks to come, if you have any questions, let me know" -- but they were both completely unflapped by the whole discussion. It's just one more set of facts to store away about the world and How Things Are.

The Band-Aid is off.

*****

Today is World Autism Day. For some wonderful posts on autism, visit The Domestic Goddess and The HG-Spot.

Blog? What Blog?

The sheer tonnage of bloggable stuff which is thus far un-blogged is enough to drive me to drink, or at least to hide under my covers (some more). So for now I'm just popping in to point y'all to a very cool idea which needs your vote: Inclusive clothing for kids with autism, Asperger's, and Sensory Processing Disorder. Part of a contest funded by Advanta, they're awarding six grand prizes of $10,000 each to the entrepreneurs to fund their projects.

Many kids with the above-mentioned disorders are extra-sensitive to clothing tags, seams, and closure systems -- some to the point of hysteria. Thankfully, Garrick and Quin have never taken this issue to such extremes (though I do still catch Garrick with his pants unbuttoned), but I can well imagine how challenging it is for parents with kids further along on the spectrum to navigate this.

The website is a little funky, so go here to register (email and name are the only required fields) and then here to place a vote. Voting ends tonight. Parents of autistic kids will thank you!

NaBloPoMo-ing My Ass Off

Phoebe has tagged me for my second meme. Thanks, Phoebe! Let's see, I might even "know" a few bloggers to pass this along to. I think. Does it count if I've known them for less than 24 hours?....


THE RULES

a. Link to the person that tagged you and post the rules on your blog. (See above -- hi, Phoebe!)

b. Share 7 random and or weird things about yourself.

c. Tag 7 random people participating in nablopomo at the end of your post and include links to their blogs.

d. Let each person know that they have been tagged by leaving a comment on their blog.


SEVEN RANDOM FACTS ABOUT MOI

1. I pick my cuticles.
   
2. I took piano lessons for eight years as a kid and wish I had time to get back to it.
3. I am not easily intimidated.
4. When we were little, my younger brother was a huge brat. Now he is one of my favorite people in the world. (Go see what he does here -- it is mind-blowingly cool.)
5. I have an embarrassingly bad memory for things my friends tell me.
6. My kids both have mild Asperger's Syndrome. The way their minds work blows me away.
   
7. I'm completely gobsmacked that there's anyone reading Lemonade & Kidneys beside my husband and my mom. (Hi, Mom!)

Tag to:

MemeGRL
Vinkus07
Tapdancing On the Edge of Reason
and anyone else reading along who wants in.

Happy turkey, everyone!